August 31, 2015

I guess for me, I'm simply looking for the place where Schuyler will be happy. I suppose I'm looking for my own happy place, too. Those two are bound together, I know. And as I've gotten older, I've come to see how complicated and elusive that might be. Now that she's a teenager, Schuyler's best bet isn't The Perfect School. And when she transitions to her adult living situation, her own level of success is going to be driven by factors depending less on the services she receives and more on the life she wants to build and the willingness of the world to make that space for her.

August 24, 2015

Is it fair, taking that word away from you? Don't you have a right to use whatever word you please? Surely brave patriots gave their lives at Lexington and Bunker Hill so that King George the Third couldn't keep you from watching reality TV and saying "This show is so retarded." I don't have an answer for you, because at this point, the question isn't about your rights. It's not. You're an American; you've got the right to say whatever you please. (If you're not an American, then check your local listings, I guess.) You've also got the right to eat that pizza with the hot dogs in the crust or vote for Donald Trump. Being an American means you can do all sorts of horrible things.

August 17, 2015

This is going to be the year that Schuyler finds her way. This is going to be the year that no tense meetings will be called and no krakens will be released, a year without confused tears and crippling social anxiety and a father feeling like a failure because his daughter has again slipped into the cracks of the world. This is going to be Schuyler's year.

August 10, 2015

More than anyone else I know or have ever known, Schuyler possesses grace. It touches us all. The one thing that I can say for certain is that it's nearly impossible to meet Schuyler and to know her without being fundamentally changed. She has limitations, that is very true, and they are almost certainly more challenging than most people truly understand. But the limitations that hold her back the most are ours, I think. Our inability to grasp the world as she understands it, and our failure to make that world a better place for her. But God, how we are all trying. I'll be trying to do that until my very last living breath.

I think it's safe to say that for as long as Schuyler wants to do it, and assuming we're asked to speak again, this will be the format my future presentations will follow, with ever-increeasing participation from Schuyler. She says she's game. (She wants to present in Hawaii. I'm not opposed to this idea.)

As I promised at the time, and of course with her permission, here are some of Schuyler's answers and statements from yesterday's presentation.

INTRODUCTION

Hello, my name is Schuyler Rummel Hudson and I am a tenth grader at Jasper High School. I'd like to talk about my life and tell you why I've been using my devices to help me talk. First I used a HipTalk, then my Vantage, which I called the Big Box of Words, and then my Vantage Lite that I called Pinkessa. Now I use an iPad Mini called the Queen of Monsters with my speaker. I am happy to be here with my father and mother to share my story with all of you.

OBSERVATIONS ON HER AAC CLASS IN ELEMENTARY SCHOOL

In my AAC class at Gulledge, we learned to use a computer, our devices, and to read books. Every day I went to my other classes after the AAC class and used my device in class. Back then, my teachers worked together, but now they don't. Some of my teachers did know how to use my device, and some didn't with my big box of words. Now, most of them understand better than back then. It think it’s because I have an iPad and they know how iPads work. I learned a lot about how to use my devices back then. I don't think I need a class now but I miss being with my other friends who talked like me.

USING HER IPAD

Which app do you use for speech? Why did you choose that app?LAMP Words for Life, because it works like my old devices, the Vantage, and helps me to talk to others.

What else do you use your iPad for?Games and movies and drawing and listening to music. I use it to send messages and Facebook.

What are your favorite games?Monument Valley and Subway Surfers

How do most people who are meeting you for the first time react when you talk with your iPad? Positively, or negatively? Positively. They think it is cool and ask questions about my iPad.

What is your favorite accent to use on your device?I use Emma voice with a British accent.

If you could change one thing about your communication device, what would you change? I like it the way it is. My iPad is not loud but I have a speaker.

Do you notice people treating you differently when you are using an iPad than when you were using the Big Box? With the Big Box of Words, they think that I am dumb and weird. When I use my iPad, people think I am like anyone else.

How would you explain your speech device to someone who had never seen someone talk like you do before? It speaks for me because my brain doesn’t want me to talk.

Can you talk a little bit about how you make the choice to use your own voice or use your iPad to communicate? For example, which situations you would never use your iPad and which situations you would always use your iPad? I sometimes try to talk with my voice first. When people can't understand me, I use my I-pad to talk. I use it at school in class. I also use it to order food when I go out with my parents.

NAVIGATING SCHOOL WITH HER DISABILITY

What are some things that teachers have done that have helped you to have good experiences in the classroom? I get help with math and science at my school. If I don’t understand the problem, my teachers tell it to me different.

What are some things that teachers did that you didn't like, or that you found unhelpful? Sometimes they go too fast and they don’t help me.

What is the one thing you hate people presuming about you, before they know you? They think that I am dumb and weird and I am not smart at all.

What has been your favorite thing about school?Meeting new friends and teachers. I like to learn new stuff. I like playing percussion in the Jasper Marching Band.

What is your least favorite thing about school?Homework

(Accompanying slide)

ON BEING SCHUYLER

What do you plan to do after high school?I think I am going to travel to Hawaii and China. I want to get married and get a job.

What is your favorite movie? Why?I have a lot of favorite movies, it's hard to pick. I like Jurassic World and Godzilla and Pacific Rim. The movie I’ve liked the longest time is King Kong. That will always be my favorite movie. I like monster movies with my dad.

What is your favorite thing to do for fun?Play the Wii U with my parents. I also like to swim and play soccer and baseball in Miracle League.

What made you decide to dye your hair?I want to be different but I want to pick how I’m different.

Who do you see as your role models or people you really admire?Amelia Earhart and Stephen Hawking

What do you want to do in the future?Maybe to help sick children and the poor and people like me with little monsters of their own.

If you could tell people one thing about your little monster, what would you tell them? It makes it hard to talk and sometimes it makes it hard to understand things. My monster is a butthead!

If you could tell your little monster one thing, what would it be?Get out of my head!

What kind of music do you listen to? What is your favorite song?I have a lot of favorite songs, it is hard to choose one. Right now I like Waiting for Superman and Black Widow and Release Me. My favorite artists are Lady Gaga and Florence and the Machine and Selena Gomez.

I'd like to know, what do you like about Plano and the Dallas/Fort Worth area? I like Six Flags, the Dallas Opera, Hawaiian Falls, Mexican food, and the zoo.

If you moved away, where would you like to live?England or Hawaii or Vermont.

Do you see yourself becoming a writer like your dad one day?Sometimes. I like to write stories and poems.

What do you like to learn about?Art and science

What is your favorite season and why?Summer, because I can see my dad's friends and have fun and swim!

What is the best Halloween costume you have worn?I have a lot of favorites. Medusa and Amelia Earhart and Brunhilde the Valkyrie.

(Accompanying slide)

What skill do you want to improve?Listening and being a percussionist who plays the drums.

If you had a ton of money, what would you do?I would travel and see the animals in Africa.

What is your best personality trait?I am funny and always happy and a good dresser.

What do you love about your life?Having the awesome parents and the best friends too.

What is one thing you thought people would ask you but no one did?No one asks about my favorite monster.

You may consider this a new policy of mine. I'd love to come speak at your conference, but just so you know ahead of time, you should be prepared to buy two plane tickets. I'm going to have a partner from now on, advocating for herself in her own strong voice. This is the path she's chosen, and I couldn't be more proud. With every presentation we give, I expect her to take on more and more of the content every time. This is appropriate for a young adult coming into her own as a self-advocate. This is a part of a future which she will write for herself.